Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Yay! Doctor Just Called With My 6 Month Results


jkmunchkin

Recommended Posts

jkmunchkin Rising Star

I'm so excited right now. My inital numbers 6 months ago where through the roof with total viloscophy. They only did the blood tests (obviously) so I don't know what state my intestine is in yet, but my doctor just called with my blood results after being gluten-free for 6 months, and she said they are almost at a normal level. She said I am doing awesome on the gluten-free diet!!

I am on cloud 9 right now :D

Not that I wasn't completely careful and determined to live a gluten-free lifestyle before, but this is just such positive reinforcement.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



jerseyangel Proficient

Jillian--that is great news! :)

happygirl Collaborator

Way to go, girl! I'm proud of you :)

dlp252 Apprentice

Congratulations!!!!!! How exciting!

jenvan Collaborator

Great news--keep it up!

carriecraig Enthusiast

That's excellent news!

floridanative Community Regular

That is the best news I've heard in a while! Congrats to you that all your hard work paid off. You give people like me (gluten-free for only a week today) hope that this can be done and in the end it will be worth it.

Side note regarding follow up visits regarding progress. My ex GI that called with my results last week said to call in June to schedule another endo in July so see how I'm doing. Well when I spoke to the University of Chicago Celiac Program researcher last week. She told me that another biopsy was now NOT the protocol to check progress on the diet. She said only to get the Celiac panel (blood) test done in six months and if that looked normal, there is no need for a biopsy. Then recheck again once a year after that. Has anyone else heard this? Most posts I've seen relate my exp. which is the get another biopsy in six months.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



jkmunchkin Rising Star
That is the best news I've heard in a while! Congrats to you that all your hard work paid off. You give people like me (gluten-free for only a week today) hope that this can be done and in the end it will be worth it.

Side note regarding follow up visits regarding progress. My ex GI that called with my results last week said to call in June to schedule another endo in July so see how I'm doing. Well when I spoke to the University of Chicago Celiac Program researcher last week. She told me that another biopsy was now NOT the protocol to check progress on the diet. She said only to get the Celiac panel (blood) test done in six months and if that looked normal, there is no need for a biopsy. Then recheck again once a year after that. Has anyone else heard this? Most posts I've seen relate my exp. which is the get another biopsy in six months.

Thanks all!!

Floridanative - that all checks out with what I know. I only had the blood tests done which is the norm. at 6 months. They will not do another endoscopy on me for another year to 2 years. U of C is giving you correct info.

AmandaD Community Regular

Glad to hear that -I'll be going in in about 2 months for my 6 month checkup.

Can I ask how you've done overall - have all symptoms stopped completely for you? Or do you occasionally have gluten slip-ups?

I'm so excited right now. My inital numbers 6 months ago where through the roof with total viloscophy. They only did the blood tests (obviously) so I don't know what state my intestine is in yet, but my doctor just called with my blood results after being gluten-free for 6 months, and she said they are almost at a normal level. She said I am doing awesome on the gluten-free diet!!

I am on cloud 9 right now :D

Not that I wasn't completely careful and determined to live a gluten-free lifestyle before, but this is just such positive reinforcement.

jkmunchkin Rising Star
Glad to hear that -I'll be going in in about 2 months for my 6 month checkup.

Can I ask how you've done overall - have all symptoms stopped completely for you? Or do you occasionally have gluten slip-ups?

I've had the occassionally accidental glutenating but I have never purposely cheated if that's what you mean.

I think I've been glutened 3 times since going gluten-free. As a newbie I guess that's not bad for 6 months time, and obviously my blood tests agree :)

julie5914 Contributor

Are you going out to eat any? I am very careful, but my 6 month labs were horrible :(. Congrats to you though. My symptoms are definitely better, so I know it feels good to have progress.

jkmunchkin Rising Star
Are you going out to eat any?

Absolutely not!!! I am celebrating tonight with a flourless chocolate souffle that DH is making me. Complete with rasperry sauce and vanilla ice cream

:P

Rachel--24 Collaborator

Awesome!!!

So glad you're doing great on the diet. :)

tiredofdoctors Enthusiast

Congratulations! You must feel GREAT! . . . Lynne

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,627
    • Most Online (within 30 mins)
      7,748

    kathrynhmarks
    Newest Member
    kathrynhmarks
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Inkie
      I  notice a reaction to tea bags, possibly due to gluten or other substances. Is this recognizable?
    • trents
      The blood tests you had done are not the main ones. The two main ones are the "Total IGA" (to check for IGA deficiency) and the "TTG-IGA". Current guidelines for the "gluten challenge" when people have been gluten free for a significant time period are the daily consumption of at least10g of gluten (about the amount in 4-6 slices of wheat bread) for at least two weeks leading up to the day of the blood draw. That should give you some perspective.
    • Xravith
      Thank you, really.  I took a test for DGP-IgA and DGP-IgG. Effectively, it is not enough to discard Celiac Disease. I was consuming gluten until then, I only started gluten-free some days ago, when the symptoms became horrible and now I feel considerably better, which is a second confirmation that gluten is the main problem. It's been more than 4 years I have the same suspect, when I first thought gluten was causing me problems, I made a gluten-free diet for a year, I felt really good as never before. However, neither I or my parents were well informed about Celiac disease, so none of us tried to make further exams. My father suffer digestive problems and other members of my family as well. Unfortunately, no one have ever been tested for Celiac disease. I'll have to restart eating gluten in the next weeks, so I can make a serious blood test in laboratory, hopefully between two or three months.
    • trents
      As Scott said, in order for celiac disease testing to be valid, you need to be eating generous amounts of gluten on a regular basis for weeks or months before the blood draw. The blood tests are designed to detect antibodies that the immune system produces in response to the ingestion of gluten. It takes time for them to build up in the blood to detectable levels.
    • Scott Adams
      Based on what you've described, it is absolutely crucial that you pursue further medical exams for Celiac Disease and related conditions with a gastroenterologist. Your symptoms—especially the worsening fatigue, loss of muscle mass, neurological symptoms like migraines, and palpitations, coupled with being underweight—are significant red flags that extend beyond typical IBS. The negative home test is not reliable, particularly given your concern about sample contamination and the fact that you were likely not consuming sufficient gluten at the time for the test to be accurate, which is a common issue. While probiotics like Bifidobacterium Infantis can support gut health, they cannot resolve an autoimmune response to gluten or heal intestinal damage caused by Celiac Disease. Your declining blood test results, even if still "in range," further indicate a trend that needs a doctor's investigation. Please do not hesitate to seek a specialist; a formal diagnosis is the first step toward getting the correct treatment, allowing your body to heal, and finally addressing your weight and overall health concerns. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.